2016 NJCTS Youth Scholarship Award Essay: “Living with Tourette Syndrome”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2016 Youth Scholarship Award contest. I hope you enjoy it!

MichaelS

MichaelS

I pondered what it meant when I was diagnosed with Tourettes. The doctor explained to me there was no cure, and that with time it’d get better, but he said Tourettes will be a part of my life forever. I had finally figured out the answer as to why I constantly rolled my eyes, or why I occasionally let out an obnoxious vocal sound. As a confused 4th grader, I didn’t realize this would soon become part of my identity. After the diagnosis I was uneasy about telling people, even my close friends, why I did all these strange things. I was scared they’d think of me differently or put a label on me. Every time my classmates asked about it, I’d reply with an indifferent “I don’t know.”

I remember showing up to a basketball camp and as we were huddled around a coach, he was lecturing us. My eyes rolled uncontrollably. He stood up and then scolded me, talking about how disrespectful I was and I was forced to run to the point where I felt like I had to throw up. I was too frightened to tell him it was because of Tourettes. After that fiasco, I realized it was time to tell people.

It took me 3 years to finally muster up the courage to tell a couple of my close friends why I had been rolling my eyes, crinkling my nose, and letting out vocal sounds. I explained to them that they were called tics that unfortunately forced me to do some strange things. I told them I couldn’t suppress these tics or else I would feel like I couldn’t breathe. I was nervous as to how they would react. I didn’t want them to think of me differently. They all essentially said the same thing: “It doesn’t matter; you’re not different; you having Tourettes doesn’t change anything.” I was shocked. I thought I’d receive some questions, but everything was alright.

Sure there were instances throughout my life where people asked questions and said mean things. Soon I realized that having Tourettes was a blessing in disguise: I was able to talk to people and educate them on Tourettes. I was trying to eliminate the stereotype that all people with Tourettes curse excessively or are constantly mumbling random words. After telling people about my neurological disorder I became cognizant of that fact that this was me, I couldn’t change it even if I wanted to.

As I got older, more and more people began to put a face to Tourettes and it was mine. I was uncomfortable with this at first, but it was a component of who I am; I’m not complete without Tourettes. People were able to see that anyone can have Tourettes and that sometimes we may not even know they do. Without Tourettes I feel like I’d be a different person, maybe a little more normal, but “normal” can be boring. Tourettes is a part of who I am: it’s an essential part of my identity. As I grow up, I realize it will forever be a part of me: maybe a small part, but a part nonetheless.

 

Poetry: “Out of Control”

You twist, you turn

You hit, it burns

You throw me around

You beat me down

You’re tearing me apart, I’m losing the fight

You push me left, as I go right

You hold me back from things I love

All I can do is trust in The Lord above

You’ve broken my bones

You’ve made me so alone

You’ve damaged my heart

I feel so broken apart

Every day and every night

I often wonder why I continue the fight

You’ve beaten me so bad

You’ve made me so sad

You’ve done one good thing for me

Sometimes it’s so hard to see

You have made me so strong

I wish I felt that all along

What is it like to be still?

I may never know. What I do know, is that every day is a new day. Life makes crazy turns, but I have to hold on to this little thing called hope.

Hope for a cure.

My mom’s still not all the way there yet, unfortunately

My mom made me mad again last night. When she’s not in the right state of mind, all these awful things come out of her mouth. Is it that when she is disinhibited her real feelings and thoughts come out, or is it that when she is disinhibited the pressures of the society she lives in that cares so much about “status” and the “norm” cannot be overcome in her mind?

I really don’t know. Just when I think I have actually made an impact on her and I have actually changed the way she thinks about Tourette’s and differences in general, she says something like this…

Last night she said to me in front of two of her good friends “these people with Tourette’s need to get their tics under control because they are not socially acceptable.” That makes me absolutely furious!

Beyond disappointed and ashamed that my own mother would say something so uneducated and ignorant! Beyond disappointed that the kind of person she is being right now is the reason my wonderful girls at camp that I feel so protective of have to work to overcome the feeling like they are “less,” “different” or that it’s not okay to be themselves.

I LOVED ALL OF THEM FOR EXACTLY WHO THEY ARE! I loved all of them because they are special and wonderful young ladies who are going to change lives and make so many people care about them just by being exactly who they are. They have already changed my life, that’s for sure. Their tics make no difference!

They are who they are and I NEVER want them to be ashamed of that and I NEVER want them to be ashamed of their tics or their OCD or their anxiety. I NEVER want anyone to ever tell them the kinds of things my mom tells me. I NEVER want them to hear those words because they are NOT TRUE and simply come from ignorance.

I don’t want them to have to deal with unkind and untrue words, I don’t want them to deal with the ignorance some people in our society still hold, and I just don’t want them to have to deal with the part of society that still thinks you have to be “perfect” and “normal” to make a difference in this world and in people’s lives and to have so many people who you love and who love you back.

I want every person in the world to understand what it is really like to have Tourette’s. I want every person to understand what a person with Tourette’s goes though when their brain is telling their body with so much power and might to do things that they really don’t want to do.

These things that are brain forces us to do can be physically painful, can be embarrassing, can be the exact opposite of what we want to do in a given situation and it doesn’t matter, our brain is going to keep telling us to do it until there is no resisting any more.

I want them to understand how hard it is to get to that point of acceptance of yourself and your tics and your differences and then to have someone you love push that down. Many people wish there was a cure for Tourette’s. I too wish for this. But sometimes even more, I wish for a cure for ignorance.

Marc Elliot claiming to be cured of his TS? What do you guys think?

Sorry for the long post guys, but I think this is important! Please comment! I really want your opinions on this!

What do you guys think of this? Marc Elliot claims that he has been cured of his TS by taking human potential courses. When this post was posted on this site and on the Teens4TS Facebook page, people started commenting and were pretty outraged by this claim.

One person said, “Just because his tics are minimized does not mean he does not have TS. If he is saying he did not have disorders, then he had a tic disorder, NOT Tourette. Everything waxes/wanes with TS is neurological and there is no cure… It is wrong for him to claim he cured himself like an elixir considering the facts of what Tourette is!”

Another person said, “Anyone educated on Tourette can blow holes into his claim. So many years of bringing awareness and ignorance like this out there that hurts it!”

And yet another person said, ” There are so many vague points in his letter that need to be examined. Has anyone ever gone for a treatment from a program that does not have a web site?… Have you ever participated in a program where they won’t tell you the names of the instructors or their credentials?… Some people with TS are so vulnerable and can be played upon so easily. Use logic and ask questions and please do not get sucked in by the promise of something that seems too good to be true.”

And yet even another person said, ” I’d much rather focus on all the great things people impacted by TS are doing rather than having to protect our kids from the insanity of a program that should never have even made it to the site given the smoke and mirrors and unanswered questions. I agree that people should make their own decisions, but, there are some things that are so off track that it creates a danger for our kids”

To see the whole converstation and to chime in on it with your opinions if you want to you can go here. PLEASE comment on this, either here or on the Facebook page. This is really important, and if we’re all to get to the bottom of this, we all need to participate. Thank you!

Tourette Syndrome is looked at differently in the Netherlands

I want to talk to you about what I’ve seen is the difference between how people look at Tourette Syndrome in the United States compared to the Netherlands, where I live.

One of the first things I saw in the way the U.S. refers to Tourette was a phrase about Tourette that had the word “cure” in it. In the 12 years I have had Tourette, I’ve never ever heard the word “cure” (or even the Dutch word for it, which is ‘genezen’), when it comes to Tourette Syndrome.

In the Netherlands, we always talk about treatment (behandelen) or therapy (therapie), never cure! I’ve been thinking about why this is and I really think it’s because no one is even near to finding a cure, so why think about it? I don’t think that far ahead. It’s even slightly frightening to me to think about a cure.

I think about the positive things Tourette has brought me and, yes, I sometimes bitch about the downsides. But since I was 14 years old, I’ve been saying that, even if it was possible, I would never give up my Tourette. It’s a part of me — without it, I’m not me!

I think Tourette has brought me so much, such as compassion, the ability to help others and even a lot of friends! I mean, don’t get me wrong, I absolutely hate it sometimes, but then I get therapy and I try to work through it. And of course there are times when I keep hating it, but how does it help me to think about a cure? Continue reading